October 31: A Day Of Thanks

Thank you for spending October with me. As the Breast Cancer Awareness Month comes to a close, so does this run of Pinktober postings of Metastatic Advocacy. I am still an Advocate, and I will still post about Metastatic issues, but this month was a special project. As October ends and we're about to enter November, which holds the American holiday of Thanksgiving, I'd like to give thanks to certain people.

Thank you, to my readers, who are helping me make this blog into something that inspires and motivates me.

Thank you to my parents. Dad and Mom, I wouldn't be where I am without your love and support, both emotional and financial. Thank you for everything you've selflessly done for me. I love you.

Jennifer & Susanne.
Photo taken by Marla Austin Photography

Thank you to Jen, the love of my life. You are brilliant and amazing, and a bright source of joy to me. I count myself blessed every day that I have your love. Thank you for always standing by me, for supporting me, for taking care of me when I need it. You are my darling, my everything, my forever, and my wife. I love you now and always.

Thank you to Dr. Steven Dunder, my oncologist. You have shown me the patience of Job when I was still blinded from all the pinkwashing and in denial about my diagnosis, and you have proven to be good to your word, fighting this disease alongside me with as much passion and determination as I am. It was chance that I ended up with you for my oncologist, but a very lucky chance. You're a solid partner in this battle and I'm grateful for everything you've done.

Thank you to the nurses and staff at the Southeast Nebraska Cancer Center. You all actually succeeded in making me feel at home and welcome, in a cancer center of all places, with being recognized and called by name when I approach the reception desk, to the phlebotomists and their patience with my sometimes-stubborn port, to the radiology techs who give me my CT scans and plenty of sympathy when the contrast injection makes me sick, to the nurses in the exam area and in infusion who are always ready to answer questions and talk a little bit about life in general, seeing each and every one of us as a human being, and not just a patient. Thank you for all that you do.

Thank you to the "midlevel providers" at SNCC. You guys are top-level providers in my opinion. The care and treatment you give us is above and beyond excellent. Thank you for taking care of me.

Thank you to Bronson Riley, for being such a wonderful Genetic Counselor. You have patience and passion and a remarkable ability to explain genetics to the rest of us. Thank you for walking me through the process of getting tested for the BRCA mutation.

Thank you to Catherine Verplank, my oncology nurse navigator. You are a pleasure to work with and are always just an email away if I need you. Thank you for all that you do.

Thank you to my friends, old and dear, who have stood by me as the news of my diagnosis broke, and offered all the support you could. Thank you for being there, and for still being here as my friend. Thank you for crying with me, for laughing with me, for helping me come up with enough posts to fill this month, and for being just generally awesome.

Thank you to my new friends, my sisters and brothers united against this horrible beast, for giving me a safe space to vent and an understanding ear to listen, letting me know I'm not alone in feeling the way I do. Thank you for your support and encouragement, and for the inspiration you give me.

One Week

So my parents were here, and Mom found a roller brush that's an easy way to get cat hair off the sofa and loveseat. She also cleaned the carpets and did some laundry, and helped me organize my closet. (She's brilliant at that) And we did a final dress fitting for both Jen's and my dresses. The straps my Grandma made for my gown needed the placement verified, and she had taken it in a bit too much and it had to be let out. So both dresses are off to Ohio with them to be finished and de-wrinkled.

Grandma and I hemming the dress

It's the right length now. It had to be hemmed by quite a bit, so Grandma used the fabric from hemming it to make the straps. I wanted something to help disguise the port bump in my chest. The scar I'm fine with, but the port bump is a little weird. The straps don't quite cover it, but it's far less noticeable than it would have been had we left the gown strapless.

We're not wearing traditional dresses, neither of us are crazy about wearing white since it seems to add pounds, visually, so we went with evening gowns that flatter us. Jen's is raspberry pink and sparkly and gorgeous. It's a hard color to match though, so I went with gray to compliment it. The bridesmaids are wearing black floor-length dresses. Not all of them are evening gowns, but they're all black floor-length and they flatter them.

The bouquets will have ribbons with the Metavivor colors, and the necklaces for the bridesmaids will have the Metavivor charm. I've mentioned this before.

One more week. Caity and her boyfriend are flying into Omaha on Tuesday and we'll go pick them up. On Wednesday, Micchi's flying in to Lincoln - an easier pickup. On Saturday, Rebecca, Sara, and Becky are arriving, and Amanda lives in Lincoln already. If Becky ends up staying with her mother instead of at an Omaha hotel, she'll be able to join in the festives on Saturday afternoon/evening. Grilling hot dogs, watching movies, getting our nails done. If they all show up, I can give them their Attendant gifts. Hmm. I think I'll do that anyway, even if Becky can't make it. I'll give her the gift on Sunday if she stays in Omaha. That would make for less things to keep track of.

In other news, I found out something new. Apparently I do have a family history of breast cancer. My great-grandma Timbrook had breast cancer and a mastectomy. I barely remember her. I barely remember my great-grandpa Timbrook. They both passed on when I was pretty little. But she's the only person in the family I'm related to that has had breast cancer.

This doesn't really change anything, except I need to go through all of October's posts and make corrections if this comes up. I might just wait for the posts to go live and then review them before I share the link on Facebook.

But a single great-grandma who had it is not a strong history. It doesn't change that I'm BRCA 1 & 2 mutation negative. But it's a bit of a relief to know I'm not the only one in my family who's had it. I have enough of being the only one with things in my family. I'm the only one in my immediate family (first cousins included) who's gay, I'm the only one who's deaf, and I'm the only one who has Vitamin D Deficiency Syndrome. (My body doesn't produce enough Vitamin D on its own, I need to take supplements, and without it, my bones won't absorb calcium properly and if I get too much calcium in relation to Vitamin D, I can end up with kidney stones.) But I am NOT the only one with breast cancer. Never mind I'm the only cousin who was alive when she was. Not the point.

In preparation for October, I have some blog entries incoming from guests, the deadline I gave is October 3rd, because I'm a Fullmetal Alchemist nerd. That's also the day I'm having my other tooth extracted. If I don't get things until the third, I'll work on getting them formatted over the weekend. They won't run  until the later part of the month, so I'll have time. And I'll also have time to figure out what to do if I don't get all the days filled.

Getting closer to the big day

My tooth extraction yesterday went smoothly. The Tramadol I'm already on, coupled with Tylenol, is doing its job of keeping the post-op pain at bay. It's making me nod off quite a bit though. I normally only take Tramadol before bed to stave off arthritis pain in my lower back. I know it is arthritis and not bone mets because the arthritis was confirmed and diagnosed with X-rays a couple of years prior to the breast cancer diagnosis, and it hasn't changed or moved. The Tramadol also helps with joint pain brought on by the Femara.

It is now exactly 15 days before the wedding. The itinerary for the wedding day has been written up, a fine piece of time management by my wedding planner, Tina. She's following up on a few more things for me, and Jen needs to finish setting the reception music with the DJ, Scott. The cake, the catering, the flowers, the decorations, all that's finalized and will be ready to go. I'm super-grateful to all these people who are volunteering their time, energy, and resources to make this a special day.

The Best Maid, Sara, has put together gift bags for the wedding party. It was her idea. She suggested something, I brought up something else, and it snowballed into a project she's enjoyed doing. She's a rockstar. She's also putting together an in-case-of-anything emergency bag with the Matron of Honor, my BFF, Rebecca. Rebecca is also in charge with making any necessary phone calls on the wedding day and helping me transport people to and from the reception.

METAvivor Ribbon Charm

Sara made beaded necklaces with the Metavivor ribbon attached as a charm, and my bridesmaid, Micchi, made matching earrings to go with the necklaces. These are just some of the goodies included in the wedding party gift bags.

Speaking of gift bags, my mother is having fun planning and putting together snack lunch bags for everyone who'll be riding on the Jone-Z Party Bus from the reception hall parking lot, to the chapel, and back again, since there'll be a layover around lunchtime at the hair salon where the party's getting hair and makeup done. These bags will include a variety of treats, ranging from healthy (and low-carb) options to indulgent, and include a bottle of water and wet wipes for cleanup. She's also bringing up some local soda water from Texas, fifteen bottles in a cooler, for people who want something other than water to drink.

All this activity and the prospect of a lot of people is triggering Jen's anxiety disorder, so Sara and I, along with Jen's "sister", Kim, are plotting ways to keep the attention off her and keeping her from getting overstimulated and having a meltdown.  My own anxiety disorder is far more mild and tends to present itself when I don't have a lot going on to occupy my attention.

As far as the plans for Pinktober go, I've got almost all the days filled. I'm holding off on writing any more posts to see what my guest bloggers will produce, along with an interview from someone at Metavivor.  I think I have the hang of this queued posts thing figured out, and I'm looking forward to seeing these going live. I think it will be a good month for everyone reading. I'll have a new tag, Pinktober, for all the posts for the month.

PSA

So I have it on good authority that my choices for background music for my funeral viewing suck. No Jpop for me. All the cries. ;_;

Oh, well. I suppose when it comes to music, I really should listen to the person who 1) will be there to listen to it and 2) can actually HEAR the music in the first place.

Funeral viewings aren't exactly the place for peppy, perky songs sung in Japanese. Gosh darn it all to heck.

And I accidentally resolved my dilemma about when to share this blog with Jen by sharing it on FetLife in a comment on the Breast Cancer Suvivor/Support group and she saw my comment show up on her feed.

Oops. Oh, well. That solved that problem, I guess.

And yeah, I'm on FetLife. I have all the sexual drive of a rock thanks to the medications, but the snark groups there (like Spectators Only, No Participants and Profile Pitfalls) are always good for a laugh. Oh noes. The world knows I have a passing interest in Kink (and yes, oh god yes, it predates 50 Shades of Utter Crap) however shall I cope.

yes, basically.

In other news, Mom's getting me my first pedicure tomorrow. We shall see how this adventure goes. Related, I have two new pairs of shoes. A pair of gray peek toe pumps, and a pair of black solid toe pumps. They are surprisingly comfortable for my feet not wearing anything but sandals in forever.

I also picked up some new ecig juice to try. Bavarian Cream. Mmmmmmmmm.

Busy!

Oh, man. Trying to pack and do chemo in the same week is exhausting. It's like this mountain of work, and I feel like I've only traveled a couple feet up, but damn, them's some hard feet. I did get some new things for the house (a socket adapter for the laundry room light bulb, a curtain rod for the bathroom, a box cutter, a couple ultra-absorbent dish mats, a new sheet/pillowcase set, some more water pitcher filters, dish soap, dishwasher soap, paper towels, plastic storage bins I can use for packing and later for storage, 9v batteries for the smoke detectors, and a new outlet surge protector for the bedroom since the one I have now is getting old and plugs are falling out.) and moved a few things from the apartment to there, mostly working on really fragile breakables that I don't want jostled around any more than absolutely necessary.

But that means numerous trips up and down 2 flights of stairs and that's steadily becoming more difficult. I can't be out of here fast enough at this rate.

I won't have to do the packing all by my lonesome - Mom's coming up from Texas to start helping on the 17th or thereabouts. I just have some stuff that I'd rather take care of myself before she gets here. And the place is so messy it's hard to know where to start with packing. I should clean up.

I need to get more things over there tomorrow, and I have all of next week to do that. But I can only do a little at a time, not the way I used to, so I won't be able to get as much done as I would have in the past, and that frustrates me. Especially because the biggest part slowing me down is navigating those stairs multiple times a day in the process. I am so done with those stairs. They weren't that much of a problem for me before chemo, even though I'd bitch and moan about them from time to time, but I could handle it. It's getting harder the more fatigued I become.

Jen's parents are giving us their old washer and dryer, along with their old fridge. So we'll have two fridges, one'll be kept in the garage for extra space so we can buy in bulk a bit easier. Not sure when we'll be getting those in, but that will also help, no more lugging loads of laundry up and down the stairs and trips to the laundromat.

Tomorrow, I suspect I'm going to feel even more like a giant, beat-up bruise than I normally do, and I'm still planning to try to make myself Do Things. We'll see how that goes.

*bell rings* Round Four!

I start Round 4 of Taxol today. I have 9 more infusions left to go counting the one I get today. (If I said 12 elsewhere, it's because I can't math). I'm going to push for surgery afterward, especially to have the tumor examined to make sure it's still ER/PR+ and Her2- before we begin hormonal therapy.

I'm also going to talk about NOT getting Tamofaxin, because I've read that it interacts poorly with Prozac, which I need to keep my brain from going loopy-depressed. I've battled chronic depression all my life.

Kohl's is still using the stupid Pink Elephant campaign despite now being fully aware they are co-opting METAvivor's campaign. We're still doing Occupy #TalkPink on twitter, and I'm trying to get some other #Talks off the ground, like #TalkMets, and #TalkBlue (for male BC) and #TalkIBC (for inflammatory breast cancer). It's slow, but it seems to be picking up.

Today's a busy day. I ended up with an extra Metastatic Navigator kit from YSC, and I'm meeting with my Nurse Navigator at the cancer center today to hand the extra one over to her to pass it on to someone else who could use it.

I also will probably find out if I'm getting a house. My parents are going in on renting a place with me, my partner, and our roommate so they have a place to stay with us when they visit instead of hotels and can help take care of things around the house if I need it. We found the absolutely most perfect place ever. Cross your fingers and say your prayers that we get this place. I will cry so hard if we don't. Please let something go right.

EDIT: WE GOT THE HOUSE!!!!!!!!!

I'm lucky my parents are finally in a financial place in their lives to do this, and I'm doubly lucky that they accept the fact their only child is gay, and accept my partner as their own daughter. My partner's parents are pretty supportive too, although my MiL is still pretty resistant to it most of the time. She bounces back and forth. My FiL is awesome. We're damned lucky.

My partner, Jen, is slowly coming to terms with this. It scares and depresses her, and she's taking it harder overall than I am. I haven't shared this blog with her yet because I don't feel she's ready. It took me a while to get to a place where I felt ready to discuss my own mortality.

I love her dearly. She's my light and my always. We've been together seven years this January, and still going strong. The early years were the hardest, before we got a clear diagnosis for her own health problems and got her on medication which stabilized it. Her health problems fall under the medical end of psychological, along with severe anxiety disorder, so it doesn't help her in getting to where she can handle my diagnosis easily. She's getting there though, and I'm so proud of her. I'm so in love with her. I'm so lucky to have her in my life.